nervous in NJ

[ramey2148]

I just recently went for blood work and doctor advised me I have MDS. He stated that I have a level of 14% of something, and stated it it was 20% it would be Leukemia. I amd 32 years old and am wondering if anyone out therre has had this for a long time. Sorry if I dont have alot of info about my case but just found out today. My doctor now want me to go for a 2nd opinion at Temple Hospital.

[Kenneth_In_Va]

He’s probably referring to the percentage of immature blood cells called "blasts". A 20% blast count is often used as an arbitrary cut point between the two conditions.

Did the Dr. do a bone marrow biopsy or is the percentage coming from another method?

Sorry for your news. All here on this forum are in a similar boat or have been there. Another good forum is at http://www.marrowforums.com.

When is your visit to Temple scheduled?

[ramey2148]

yes they stuck a needle in my hip and took the bone marrow. The full results are not back and he called me in today with my wife to tell me I had Myelodyplastic syndrome. I know my blast count is 1.2 if that helps with anything. i really just want to know what is I have to look foward to. Can I live a long life?

[ramey2148]

Said they were going tomake an appt. for me next week at Temple. This is driving me crazy because I have been a healthy person my whole life and when I rea about this condition it appears everyone is 60 plus years old. My age is 32

[Jerseyson]

Also from New Jersey, I’m involved and checking out this site thru my 85 year old New Jersey resident mother, recently diagnosed with an MDS alongside thrombocytosis (RARS-T). If you’re nearby to the Burlington/Mercer County border, drop in (call in advance for more attention) where this site’s foundation headquarters are for some added direction and comfort. It is surprising you were sent for a second opinion. I felt she should have one at one of the "Big Shots" in New York but her local hematologist started her right off on Revlimid as of today despite her pretty "low risk" counts. She had no side effects today, and she’s 85! Keep cool. Stress causes more physical damage than a disease in most cases.

[ramey2148]

Thank you. My main question i want to know is if people live long with this disease? I am 32 years old and looked on a site that says the average age is 66. I guess I will have some answers tomorrow because i will be in Philadelphia at Temple Fox Chase Jeanes Hospital. My doctor sent all of my blood work there to be evaluated.

[Zoe]

Ramey,

Yes, people can live a long time with MDS. And many people are younger. There was a study done in Germany which found that younger people with MDS in the low risk categories were still alive and kicking at 30 years post diagnosis. Do you know what type of MDS you have? Blast count, that kind of thing, or is that what you will find out tomorrow?

Zoe

[ramey2148]

Went to Temple yesterday and they had me do another bone marrow. They said my results will be bcak in 10 days. The first one I did I guess the local doctor didnt do enough tests on so they wanted another one. My blas count is 1.2 (I think i am looking at the right number), There is a level that I am not totally sure what they talking about. They said I am at 14% and when it reaches 20% it becaomes acute leukemia. The doctoe at Temple said I have an odd case because only my WBC (2.9) is low and other counts are normal. She did advised me I will need a bone marrow transplant and asked me to have my brother tested to see if they area match.

[ramey2148]

And Zoe do the people that live long get a bone marrow transplnt done or do they just live with the disease? Thanks for the 30 year possitive feed back. That is the best news I have heard EVER. Everthing has happened so fast with me that I feel like I got hit by a train.

[Zoe]

I know that train feeling! The first time I had to walk into a cancer clinic was awe inspiring in a humble sort of way.

What I recall in the article, the people who lived 30+ years did not have transplants. It was (maybe still is) the largest study of patients under 50 years old at diagnosis. I was just looking at the article–at 20 years, 86% of low and intermediate patients who were younger than 50 at diagnisis were doing well without any intensive treatments, which would include transplants.

I do wonder if the 1.2% blast count is in the blood, because I can’t think of anything else besides bone marrow blast count that defines AML (acute leukemia) at 20%. They won’t have your bone marrow blast count until your results come back.

Even if you do need a transplant, your young age will be a huge asset to you! I know, believe me I know in many areas of my life, that this is easier said than done, but enjoy each day as a gift to unwrap. Even with this diagnosis hanging over your head, don’t let fear steal the joys of today.

Keep us posted!

Zoe

[ramey2148]

Thanks for your knowlege!!! I will keep you posted so you can guide me as much as possible. I REALLY apreciate and look foward to your responses. It gives me piece of mind.
THANK YOU!
Bob

[ramey2148]

Zoe, (and anyone else who had good advise)

My doctor called me Friday afternoon before after i woke up (I work nights) and told me she classifiedd me as intermediate 1. I still have to go to my appt. on Monday but she decided to call me because I have been having terrible anxiety since I was told. She told me i will need to get blood work monthly and go to her every 2 months to check my levels. I was told my cytogenics (spelling?) were fine and she didnot feel a need to put me on medication. Because of my insurance requirements she is telling them I need a BMT so they approve the testing for my brothers to see if they are a match.

[ramey2148]

Also if you (or anyone else) have any good questions I can write down to ask my doctor on monday please let me know. When I get there I always forget so I started to write some down. It’s amazing how you have all the right questions to ask when ou get there and the nerves take over.

[jimkufis]

Hello Zoe. Jim Kufis here. I am 70 and have had MDS for 3+ years and my MDS is currently "controlled" with Revlimid. This is not a cure and is only supportive. The bone marrow (stem cell) transplant is the only known "cure" for MDS and works best with young people such as your self. It is a procedure that takes some courage but it potentially can provide exceptional results. Ask your doctor to fully explain this stem cell transplant procedure so that you are fully aware of what lies ahead. Also, if you have a low white blood cell count (WBC)would injections of Neulasta help improve the WBC count for your condition which may be refered to as Neutropenia. White blood cells are also called Leukocytes.

[Zoe]

Ramey,

It is good your cytogenics are fine. As for some questions: I would clarify the blast count. Is it 14% or 1.2%? Anything under 5 is nothing with MDS. I don’t know what it is in non-MDS people. My guess is your blast count is 14% since you are intermediate 1. It sounds like the doctor wants to have potential family donors lined up if needed down the road, but s/he doesn’t see the need for it at the moment. I would be wondering what they are looking for in making that decision. Do you know what your blood counts are? I always get copies of all reports. It is easier to look it over at home, do some on-line research, then when I go back to the hemo my questions are more focused. Also, it is good to know if you have low neutrophils as this can make a difference in your body’s ability to fight disease. If your white count (of which neutrophils are a part) is low, you may want to take precautions, particularly around sick people.

Jim,

I must apologize if I said something that sounded like I was saying that MDS could be cured with anything less than a transplant. I looked back at my posts in this thread but didn’t see anything, but you know how posts can sometimes be confused. You are absolutely correct in saying that meds control MDS, not cure it. Thanks for calling me young, I don’t get that much any more.

Zoe

Zoe

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